By Eli Friedman, MD

Before 1960, doctors were limited to setting broken bones, removing inflamed organs (gall bladder, appendix), immunizing against fatal infectious diseases (small pox, infantile paralysis), cutting out or X-ray burning some cancers, and planning a way to repair damaged heart valves. The concept of delaying death after failure of a vital organ system such as the lungs, heart or kidneys was a dream until Belding H. Scribner, at the University of Washington in Seattle, showed repeated treatments with an artificial kidney maintained life for a prolonged but undefined time. First called “chronic dialysis” and later maintenance hemodialysis by those performing the treatments, it became clear an undefined era of managing an unknown number of patients who preferred life due to machine treatments over death had begun.

After learning of the “Miracle in Seattle,” the Chronic Disease Branch of the United States Public Health Service, guided by Dr. Benjamin Burton, established a series of Demonstration Dialysis Center Grants throughout the United States to confirm Scribner’s results and prepare for the coming stream of patients with kidney failure who wanted to live. Illustrating how little we knew of what lay ahead, Committees (termed “Death Committees” by Life Magazine) were established at each dialysis facility to select those who would be treated. Excluded by the “wisdom” of the time were patients over age 50, or who had diabetes, or lacked a job or active student status. The initial dialysis treatment schedule was overnight, twice weekly, for 10 to 16 hours.

Kidney doctors had to learn to use propane torches in order to heat and bend Teflon plastic into Scribner’s newly invented individualized connectors – short circuiting blood between a wrist artery and vein – according to each patient’s anatomy. A major concern in early dialysis was keeping this vascular access – called a shunt – open between dialysis treatments and ready for the next dialysis. Clotted, infected, and/or accidentally opened shunts caused hospital admission and sometimes death. Support sessions scheduled to help patients learn how to care for their shunts gradually expanded into overall general informational meetings.

The minutes of these meetings were shared between units and gradually grew into an “advice newsletter” for two dialysis groups in Los Angeles and Brooklyn units, who named themselves the National Association of Patients on Hemodialysis (NAPH). A key concern for doctors working with the fast growing NAPH was while their medical advice was valued by the patient group, political control and direction of the organization had to be managed by patients.

In 1972, when transplant surgeon Samuel L. Kountz came to Downstate Medical Center in Brooklyn to offer new kidneys to a rapidly expanding population of dialysis patients, he proposed their organization be renamed the National Association of Patients on Hemodialysis and Transplantation (NAPHT), a difficult to pronounce but fairer reflection of who the group represented. As increasingly successful peritoneal dialysis (PD) was added to the choice of treatment options for kidney failure, a further name change adding a second P made “NAPHTP” unpronounceable and the American Association of Kidney Patients (AAKP) was born.

Throughout its 40 year history, AAKP has successfully retained its independence and integrity. Although supported by industrial grants, the organization belongs to its members and not its sponsors. During our current national economic stress, AAKP has had to deal with a reduced budget and innovative staff adjustments. Patient Presidents with remarkable leadership capacities have consistently kept the organization’s focus on patient issues and benefits. With the loss of Kris Robinson, AAKP’s long serving Executive Director, herself a kidney transplant recipient, and the enthusiastic engagement of Kim Buettner, in that capacity, fresh solutions are being considered to allow AAKP to be there for its members. Especially valuable are AAKP’s Web site and publications permitting direct patient access to key information and resolution of problems that persist after being presented locally.

It is the intent of AAKP’s Medical Advisory Board to serve as a patient resource delivering rapid, comprehensive and unbiased information to often confused, frightened and apprehensive patients beginning their increasingly long trek along the road of kidney failure treatment success. When AAKP began, our Brooklyn program had a “Decade Club” at which dialysis patients who survived for 10 years were honored at a dinner and given a plaque. Happily, the progressive increase in Decade Club membership became both a cost burden and a lesson in how the cost of vital system organ replacement will prove a stress in health care financing. Illustrating this point, AAKP is now attempting to determine whether it should express a “position” on the question of “bundling” of dialysis fees and reimbursement as a means of reducing charges to Medicare. Like social security and other expenses that rise along with the number of older people benefited, the story of a few people somehow kept alive in Seattle despite having the fatal disease of chronic renal failure, is reason for all of us to reflect on just how we may manage the coming expenses of other organ substitutions in our brave new world of bionic medicine.

Eli A. Friedman, MD, is Distinguished Teaching Professor at SUNY Health Science Center in Brooklyn, NY and Chairman of the AAKP Medical Advisory Board.

This article originally appeared in the September 2009 issue of aakpRENALIFE.

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